McKinley's First Casting: November 28, 2012
It was a very emotional day. And it all started as soon as we entered the hospital hallway. McKinley was determined she was not going to let the nurse take her temperature, blood pressure or check or oxygen. After about 15 minutes of bribery and getting to choose a build-a-bear she finally gave in to the temperature & oxygen check. However, we still had to force her to check her blood pressure :( The entire time she kept crying and saying that "I do NOT want my cast!" and "I want to go home!" She didn't know, that more then anything I just wanted to take her home too.
The time finally came and we were taken upstairs to the OR prep room. She gagged, spit out, and had a complete break down when it was time to take the versed. She was not very happy about putting on her "cast shirt" either. The cast shirt is like a white tank top that stays on under the cast to help protect her skin. After getting prepared for surgery she was able to pick out another toy from a VERY large wagon full of all types of toys .... her pick A Unicorn Jewelry box that you decorate. Then it came time to put her on the bed so they could take her back to the OR. She began crying and screaming as soon as her daddy put her on the bed. I just wanted to hold onto her as they rolled her away crying.
Logan & I joined the family downstairs and played with the Parker & Greenlei as we patiently waited for the 1.5 hour procedure to complete. When they called our name over the intercom we quickly went back to the nurse station who escorted us back up to the OR floor, where we waited to speak with the doctor. So many emotions were in that room while waiting on him. We were anxious, nervous, scared, and of course hopeful he would give us some great news that our little girl was going to be okay. {READ HER DIAGNOSIS BELOW}
After we talked with the doctor we waited downstairs for about 30 minutes until she got out of recovery. We heard her screaming as soon as she came out of the elevator :( She was extremely upset and wanted her IV OUT and her cast OFF! "Please take it off, please?!" and "I just want to go home!" is all she kept crying. She wanted up out of the bed and she let her maw-maw hold her. We finally got the nurses to take the IV out which calmed her down a little bit for her to fall asleep in her maw-maw's arms. Poor girl was jerking in her sleep because she was that distraught over the cast. I just wanted to rip the cast off and say we can go home. It was very heartbreaking for everyone to see her go through this.
We carried her down to the casting room where she was woken up and began screaming and crying all over again. The casting room is where they trim the cast if needed, wrap it in "mole skin" (a soft foam like material to cover the hard edges of the cast) and then wrap it in her color choice. Luckily the cast did not have to be trimmed so that saved us a little bit of time and fighting. She also received a wrapped present from the casting room.
When we returned to her room upstairs we were quickly discharged. However, McKinley wanted the cast off before we went home. She refused to put clothes on as we went to the car. We finally convinced her to get in the car seat and we would put a gown on her after we got home (of course she thinks we can take the cast off first?). McKinley rode home from Greenville in just her cast and pull up. We cushioned her in with pillows to try to make her comfortable on the 2 hour ride home, where she eventually went to sleep.
Doctor Medenlow's Diagnosis:
First we were assured that she was doing good and in recovery. And that she didn't put up that much of a fight when they got her back to the OR ... as she quickly went to sleep so they could insert IV and begin procedure.
He then told us he took an x-ray of her back while she was laying down and found that her 70 degree curve was actually 76 degrees. He explained that this error easily occurs when an x-ray is taken of the child standing up. He also discovered she has developed an additional curve in the lower part of her back of 49 degrees. Which is caused by her first curve at the top of her back. After he applied her fiberglass cast he took another x-ray of her back. He was able to get her top curve to 50 degrees in cast and the bottom curve to 10 degrees. {Please note: this does not mean her spine is better, it just means that is what it is corrected to while in the cast, when the cast is removed her spine will more then likely be curved at the same 76 and 49 degree curve.}
He proceeded to tell us that he is not very hopeful this casting procedure is actually going to work on "curing" her back, but he does have hope that it will prolong future back surgery. Her upper curve is so high, the cast does not actually hold it completely. And she is 4 years old, meaning her spine does not grow as fast as it does in the first 3 years of life. Which means the slower the spinal growth - the slower the correction. He is pretty certain she will face surgery around 8-9 years old ... we however are still praying for a miracle!
And then he answered our questions & probably some of yours too? :
"When can she remove the cast?" - McKinley will wear the first cast for 6 weeks, but with each cast she will gradually increase to wearing the casts 8-12 weeks at one time. We can remove the cast 3-5 days before her second cast which is scheduled for January 9th. We can remove her cast at home with a pair of garden shears between January 4th -January 6th ... counting down the days now! :)
"What if the curve gets worse?" - It's not likely that her curves will get worse, but it is likely it will stay the same. We will not really know if the cast is actually helping her back until at least 1 year of casting. In McKinley's situation he will take more x-rays then normal to monitor the curves.
"What happens after a year?" - After the year they will re-evaluate her curves and we will hopefully continue casting. Hoping we can push off surgery as long as we can.
"Why cast if surgery is inevitable?" - The risk and failure rate for her to have surgery at such a young age is 100%. We can't put her at risk, if the casting is slowing her curves down or hold them where they are now for a few more years.
"Does she get a break in the summer?" - More then likely not. If her curves are making improvements, we would just slow the process down by taking her completely out of a cast for 2 months. There is a possibility of bracing for summer, but really depends on her progress.
Logan & I joined the family downstairs and played with the Parker & Greenlei as we patiently waited for the 1.5 hour procedure to complete. When they called our name over the intercom we quickly went back to the nurse station who escorted us back up to the OR floor, where we waited to speak with the doctor. So many emotions were in that room while waiting on him. We were anxious, nervous, scared, and of course hopeful he would give us some great news that our little girl was going to be okay. {READ HER DIAGNOSIS BELOW}
After we talked with the doctor we waited downstairs for about 30 minutes until she got out of recovery. We heard her screaming as soon as she came out of the elevator :( She was extremely upset and wanted her IV OUT and her cast OFF! "Please take it off, please?!" and "I just want to go home!" is all she kept crying. She wanted up out of the bed and she let her maw-maw hold her. We finally got the nurses to take the IV out which calmed her down a little bit for her to fall asleep in her maw-maw's arms. Poor girl was jerking in her sleep because she was that distraught over the cast. I just wanted to rip the cast off and say we can go home. It was very heartbreaking for everyone to see her go through this.
We carried her down to the casting room where she was woken up and began screaming and crying all over again. The casting room is where they trim the cast if needed, wrap it in "mole skin" (a soft foam like material to cover the hard edges of the cast) and then wrap it in her color choice. Luckily the cast did not have to be trimmed so that saved us a little bit of time and fighting. She also received a wrapped present from the casting room.
When we returned to her room upstairs we were quickly discharged. However, McKinley wanted the cast off before we went home. She refused to put clothes on as we went to the car. We finally convinced her to get in the car seat and we would put a gown on her after we got home (of course she thinks we can take the cast off first?). McKinley rode home from Greenville in just her cast and pull up. We cushioned her in with pillows to try to make her comfortable on the 2 hour ride home, where she eventually went to sleep.
 |
| I was able to get a picture of the cast while she slept. This is before we went to the cast room and got it wrapped. There is a hole in the stomach area to allow it to breath and a small hole in the upper back. The white shirt stays on underneath to help protect her skin some. |
Doctor Medenlow's Diagnosis:
First we were assured that she was doing good and in recovery. And that she didn't put up that much of a fight when they got her back to the OR ... as she quickly went to sleep so they could insert IV and begin procedure.
He then told us he took an x-ray of her back while she was laying down and found that her 70 degree curve was actually 76 degrees. He explained that this error easily occurs when an x-ray is taken of the child standing up. He also discovered she has developed an additional curve in the lower part of her back of 49 degrees. Which is caused by her first curve at the top of her back. After he applied her fiberglass cast he took another x-ray of her back. He was able to get her top curve to 50 degrees in cast and the bottom curve to 10 degrees. {Please note: this does not mean her spine is better, it just means that is what it is corrected to while in the cast, when the cast is removed her spine will more then likely be curved at the same 76 and 49 degree curve.}
He proceeded to tell us that he is not very hopeful this casting procedure is actually going to work on "curing" her back, but he does have hope that it will prolong future back surgery. Her upper curve is so high, the cast does not actually hold it completely. And she is 4 years old, meaning her spine does not grow as fast as it does in the first 3 years of life. Which means the slower the spinal growth - the slower the correction. He is pretty certain she will face surgery around 8-9 years old ... we however are still praying for a miracle!
And then he answered our questions & probably some of yours too? :
"When can she remove the cast?" - McKinley will wear the first cast for 6 weeks, but with each cast she will gradually increase to wearing the casts 8-12 weeks at one time. We can remove the cast 3-5 days before her second cast which is scheduled for January 9th. We can remove her cast at home with a pair of garden shears between January 4th -January 6th ... counting down the days now! :)
"What if the curve gets worse?" - It's not likely that her curves will get worse, but it is likely it will stay the same. We will not really know if the cast is actually helping her back until at least 1 year of casting. In McKinley's situation he will take more x-rays then normal to monitor the curves.
"What happens after a year?" - After the year they will re-evaluate her curves and we will hopefully continue casting. Hoping we can push off surgery as long as we can.
"Why cast if surgery is inevitable?" - The risk and failure rate for her to have surgery at such a young age is 100%. We can't put her at risk, if the casting is slowing her curves down or hold them where they are now for a few more years.
"Does she get a break in the summer?" - More then likely not. If her curves are making improvements, we would just slow the process down by taking her completely out of a cast for 2 months. There is a possibility of bracing for summer, but really depends on her progress.
